23 June 2022 | 12:00-13:00 | Online
European Reference Networks (ERNs) aim to optimise care for patients with complex or rare diseases and conditions that require highly specialised treatment, by facilitating discussion among providers in different European countries and bundling knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly specialised healthcare units from over 300 hospitals in 26 EU countries.
The first years of experience have shown that ERNs have succeeded in strengthening cross-border collaboration, involving patients in their activities and pooling expert knowledge. At the same time, more could be done to increase disease coverage, reduce administrative burden and the uneven representation of participating countries, plus to secure sufficient funding and integration in national healthcare systems.
The EU4Health programme reiterates a strong, shared commitment to addressing chronic diseases, including the potential to extend the scope of ERNs to other complex communicable and non-communicable diseases. How can we build on the successes of the ERN model to ensure best possible care for patients with rare diseases in a post-pandemic world? Is the ERN model the way forward for service delivery in a stronger European Health Union?
This is the third installment in a series of webinars on the European Health Union initiative, aiming at advancing the European Health Union beyond crisis preparedness and adding value for societies and citizens. The webinars are jointly organised by the European Observatory on Health Systems and Policies, and, the European Health Forum Gastein (EHFG).
Deputy Head of Unit, European Reference Networks and Digital Health, European Commission, DG SANTE
Executive Director of Science Policy and Regulatory Affairs, European Federation of Pharmaceutical Industries and Associations (EFPIA)
Yann Le Cam
Chief Executive Officer, EURORDIS-Rare Diseases Europe
Programme Manager, European Observatory on Health Systems and Policies
Secretary General, European Children’s Hospitals Organisation (ECHO)
Head of Division of Clinical Genetics and Genomics, Centre for Medical Genetics, Vilnius University Hospital Santaros Klinikos